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Thread: Scoliscore - Quo Vadimus?

  1. #16
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    Other points in the talks that I though were interesting:

    1. The genetic data largely agree with the Lonstein and Carlson (1984) empirical/observational data about the rate of progression increasing as the angle increases (linear at small angles and exponential at large angles). That is consistent with a genetic control on eventual angle achieved.

    2. Some 80% of patients based on school screenings are low risk and will never progress. This means ANY treatment on low angles will appear to be at least 80% effective. Clear and others exploit this fact with unsuspecting bunnies who don't know this.

    3. Of these "low risk" low Scoliscore patients, > 99% won't progress to > 40*. But as we have seen recently, some experienced surgeons are telling people that it isn't unusual that curves as low as the low to mid 30s* at maturity will progress to surgery territory even in young adults. And indeed we have seen several testimonials to that effect on the forum. So the true useful question may be how many progress to some angle below 40* wherein a large fraction of those patients will never progress to surgery territory. As it stands now, this cutoff (<40*) may be of relatively little use.

    4. Non AIS people are related back at the 24th generation but AIS cases are related back to the 9th generation. This would seem to be very strong evidence for genetic control although I don't know if doing this work in Utah with a history of polygamy has completely biased the sample. I wish they did that in a state with a more rational history.

    5. The data are biased at the low end (very few cases less than 20*) and biased at the high end (didn't pass along data of folks who made it to ~40* but didn't progress to surgery at that time). That will affect the conclusions.

    6. Suken A. Shah is in the running for most devastatingly handsome orthopedic surgeon.
    Last edited by Pooka1; 04-17-2010 at 04:29 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #17
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    Quote Originally Posted by tonibunny View Post
    I was contacted by the Director of Comms at Axial Biotech a few weeks ago, and she said I could contact her at any time with questions about Scoliscore. I'll ask her if she could possibly come here so you can have a discussion Dingo
    That would be great - Thanks Toni!

  3. #18
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    Error ranges

    Just looking at the error range on the scoliscore graph that Newton presented... it is maximal at intermediate scores. If those are one standard deviation high and low then the RISK of progression at a score of 150 will fall between about 52% and about 68% 95% of the time. Five percent of the time time it will fall outside that range.

    I'd also like to see their rate of Type 1 and Type 2 errors in table format. That would be interesting.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    Need Pnuttro

    The best hope for this thread is if Pnuttro comments. She has previously commented on Scoliscore and I just wonder if she has any further comments.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #20
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    Future Uses - Pain Prediction?

    The aim of Scoliscore is the accurate prediction of progression. As data is collected, analyzed, and patients followed throughout the years - other applications may surface (possibly for adults).

    Surgical treatment does not always result in a pain free outcome. I've often wondered why. Pondering genetic predisposition to progression leads me to consider that perhaps while fusion and instrumentation physically holds the curve - such does not necessarily eliminate the predisposition for progression. If a spine is genetically predisposed to progression, will it "try" to progress regardless of instrumentation? There are cases where progression may continue even after surgery. I would imagine this is quite painful.

    So - it may be important to be able to accurately identify those who fall into a genetically predisposition to progress category (or very high Scoliscore), in order to better understand who will and who will not continue to experience pain following surgery. And possibly, the Scoliscore could one day help to provide information in that area as well.

    Then again, as someone who will always face the possibility of surgery, I could just be guilty of pondering too much and too deeply.
    Last edited by mamamax; 04-17-2010 at 03:14 PM.

  6. #21
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    Pain

    I think we can surmise from the average outcome of patients with just a curve (i.e., kids) versus those with a curve plus a bunch of other damage from the curve or just from aging that long term post op pain is related to the presence of the bunch of other damage.

    Most kids are usually off pain meds in a few weeks and most adults are not. That's a pattern right there.

    Not proof or even evidence but a suggestion consistent with the data.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #22
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    Quote Originally Posted by mamamax View Post
    There are cases where progression may continue even after surgery.
    If the spine is fused and the implants hold, the curvature will not progress. What you're probably referring to is some people who had fusion surgery before the era of implants. As far as I know, these people did not report pain at any higher rate than the general public.

  8. #23
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    Quote Originally Posted by Pooka1 View Post
    It is would be next to impossible to distinguish between the following two scenarios:

    1. faulty genes

    2. faulty genes plus environmental trigger if the environmental trigger is ubiquitous.

    The distribution patterns of AIS cases would be IDENTICAL between these two scenarios.

    The simplest explanation that best describes the situation now is that it is genetic as Oglivie states outright though of course if there is an environmental trigger and someone ever identifies it, then that is an avenue of research for AIS prevention hopefully.
    I tend to agree with Pooka1 on this matter. She is the mother of identical twins who not only both had scoliosis, but also both progressed to surgical intervention. Not genetic? Hmmm... I'm guessing, Pooka1, that the girls did not manifest "identical" symptoms? Maybe that is where environment comes in to play - even if it is environment in the womb.

    And, yes, there are many genes that we have, that have either environmental triggers and/or consequenses. Look at sickle cell anemia. Those people that carry one good "gene" and one bad "gene" seem to be malaria resistant (I don't have a citation - repeating from memory). Those that have two bad copies end up with sickle cell anemia.

    The thing that confounds me a bit is that the genetic component of this disease is expressing itself as autosomal dominant, recessive, and I believe they mention X-linked. This can only lead one to assume that there are several "genes" involved and we are looking at multiple players in this game. I have scoliosis and so does my daughter (although not as severe). Is this a case of autosomal dominancy or one good copy one bad copy? There are also a slew of other disorders connected to scoliosis (connective tissue disorders, Marfan's for one). Maybe there are several types of "AIS" that have a similar phenotype but lack the same genotype (sorry if sounding redundant).

    To address the "I" in AIS. That is what, I believe they are trying to figure out. Idiopathic - coming from the same root word as "idiot" - only suggests that "they don't know". Well what is science all about, but to figure out the unknown? When we know, we will be better equipped to deal with it.

    If families with known cases of scoliosis consistently come up with genetic markers that are absent in the non-scoliotic population, you can pretty much assume that it is genetic, whether there is an external trigger or not. Then when those rare cases surface where there is no such genetic link, I think we can reserve the term AIS for those cases and those cases alone.

    I had never heard of scoliosis. When I found out about it, no one in my family thought it was a big deal. When I took part in this study, then my family started talking. We have four cases, plus mine, within a two generation span one way or the other from me and one case of Marfan's. How can one NOT say that it is not genetic, at least in some families? Maybe there truly are AIS cases, but I think they will be harder and harder to find, now that there are genetic markers to go by. The truly non-AIS patients are the ones that benefit from the test.

    The boys were left out of the initial scoliscore testing because they believe that estrogen may be an influence on the likelihood of progression. It was in one of the videos.

    Just my thoughts.

  9. #24
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    Quote Originally Posted by LindaRacine View Post
    If the spine is fused and the implants hold, the curvature will not progress. What you're probably referring to is some people who had fusion surgery before the era of implants. As far as I know, these people did not report pain at any higher rate than the general public.
    People with the old Harrigton rods, I believe, continue to progress because those rods tended to bend. I don't know how the "fusion" allows it. I have a friend with congenital scoliosis who was 90+ degrees before Harrington's were implanted. She obtained correction to around 60* and she has progressed again, I'm not sure how far, but she looks a FAR cry from 60* just looking at her, poor thing. She is too far gone to have repeat surgery as it has affected her heart and lungs. She is on Oxygen and is basically waiting to die. I wish she would see a specialist out here that would tell her that, or not, so she can get help if it really isn't too late. But that's what her doctor's where she lives told her. I think she is tired of fighting scoliosis. It's been one wicked ride for her, her whole life.

  10. #25
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    Quote Originally Posted by rohrer01 View Post
    I tend to agree with Pooka1 on this matter. She is the mother of identical twins who not only both had scoliosis, but also both progressed to surgical intervention. Not genetic? Hmmm... I'm guessing, Pooka1, that the girls did not manifest "identical" symptoms? Maybe that is where environment comes in to play - even if it is environment in the womb.
    BINGO! Very astute. Are you in a science field or just good at it?

    I agree.

    And, yes, there are many genes that we have, that have either environmental triggers and/or consequences. Look at sickle cell anemia. Those people that carry one good "gene" and one bad "gene" seem to be malaria resistant (I don't have a citation - repeating from memory). Those that have two bad copies end up with sickle cell anemia.
    Yes, sickle cell persisted because people with the trait and who didn't have the full-blown disease were more resistant to malaria than others without the trait. So the gene persisted. Maybe the same happened with scoliosis genes. I wonder what the advantage might have been that co-occurred with the scoliosis gene?

    The thing that confounds me a bit is that the genetic component of this disease is expressing itself as autosomal dominant, recessive, and I believe they mention X-linked. This can only lead one to assume that there are several "genes" involved and we are looking at multiple players in this game. I have scoliosis and so does my daughter (although not as severe). Is this a case of autosomal dominancy or one good copy one bad copy?
    I am not a biologist but I think that is straight dominance. I always have to look up autosomal when I see the word. Pnuttro could explain this well - she is a biomedical researcher.

    There are also a slew of other disorders connected to scoliosis (connective tissue disorders, Marfan's for one). Maybe there are several types of "AIS" that have a similar phenotype but lack the same genotype (sorry if sounding redundant).
    Good question. I don't know.

    To address the "I" in AIS. That is what, I believe they are trying to figure out. Idiopathic - coming from the same root word as "idiot" - only suggests that "they don't know". Well what is science all about, but to figure out the unknown? When we know, we will be better equipped to deal with it.
    Right. They will crack this nut eventually or I certainly hope so!

    If families with known cases of scoliosis consistently come up with genetic markers that are absent in the non-scoliotic population, you can pretty much assume that it is genetic, whether there is an external trigger or not. Then when those rare cases surface where there is no such genetic link, I think we can reserve the term AIS for those cases and those cases alone.
    Or maybe a spontaneous mutation and then it is still straight genetic. I think that's why Oglivie can state with some confidence it is genetic at this point.

    I had never heard of scoliosis. When I found out about it, no one in my family thought it was a big deal. When I took part in this study, then my family started talking. We have four cases, plus mine, within a two generation span one way or the other from me and one case of Marfan's. How can one NOT say that it is not genetic, at least in some families? Maybe there truly are AIS cases, but I think they will be harder and harder to find, now that there are genetic markers to go by. The truly non-AIS patients are the ones that benefit from the test.
    I had a similar experience suddenly finding relatives on BOTH sides of the family with scoliosis and even at least one fusion. People don't mention it sometimes or family members may just hear that a relative has a back problem without the word "scoliosis" being mentioned. I think if they radiographed (not just asked) all relatives of every case it would become very obviously a genetic disease. We know already that self reporting leads to huge errors.

    As for Marfans, my kids are being monitored for that though they don't meet the diagnostic criteria now. That one at least has a known ~25% spontaneous mutation rate so it can appear sporadically though it is a dominant trait and much more often is simply in the family. If my kids ever get that diagnosis, it will likely be a spontaneous mutation as I know of no other case of people with that diagnosis or anyone dying in their 40s from aortic dissection on either side of the family.

    [/The boys were left out of the initial scoliscore testing because they believe that estrogen may be an influence on the likelihood of progression. It was in one of the videos.

    Just my thoughts.
    Those are good thoughts in my opinion!
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #26
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    Quote Originally Posted by rohrer01 View Post
    People with the old Harrigton rods, I believe, continue to progress because those rods tended to bend. I don't know how the "fusion" allows it.
    The rods bend because they didn't fuse because the rods weren't enough to allow fusion to occur as far as I know. Linda will edify me if that is wrong. That is why surgeons will cite the pedicle screw as the major advancement in this field. The rate of pseudoarthrosis is very low with screws and in fact the implants are so good that 95% of kids need no physical restrictions at all and still get a solid fusion. That's pretty good.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #27
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    Quote Originally Posted by rohrer01 View Post
    People with the old Harrigton rods, I believe, continue to progress because those rods tended to bend.
    I never heard of a single case where Harrington rods bent inside of a patient. If you ever have a chance to handle a Harrington rod, try to bend it.

  13. #28
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    Quote Originally Posted by LindaRacine View Post
    I never heard of a single case where Harrington rods bent inside of a patient. If you ever have a chance to handle a Harrington rod, try to bend it.
    Well don't they break from repeated bending?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #29
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    Quote Originally Posted by Pooka1 View Post
    Well don't they break from repeated bending?
    Yes, but the bending is on the microscopic level, and it's not a permanent bend. (In other words, a rod may bend a millimeter one way, then back again, over and over.) It would not allow the curve to progress more than a few degrees, unless the rod breaks, in which case, all bets are off.

  15. #30
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    Quote Originally Posted by LindaRacine View Post
    Yes, but the bending is on the microscopic level, and it's not a permanent bend. (In other words, a rod may bend a millimeter one way, then back again, over and over.) It would not allow the curve to progress more than a few degrees, unless the rod breaks, in which case, all bets are off.
    Ah okay. I get that. Thanks.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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